one month

 

It's been one month since we brought Rico home from Mayo. His situation is not much different - but me? 

Well.

I didn't think it was possible to feel so broken as a human being until now. I thought that maybe there was a different word for what this is, but there isn't.

I know mental health. I know anxiety. I know depression. I know OCD, PTSD, ADD - all the D's.

This is not those. This is broken.

I am incapable of being the wife, the mother, the teacher, the friend, the human I am supposed to be. Everything is fragmented - like a broken mirror - I can see what I was supposed to be, but it's not whole anymore, and there is really no putting it back together.

There is so much guilt. What if I hadn't forced him to get that left hand checked? What's the worst that would have happened? There probably would have been a stroke, a seizure, an aneurism. It would have been shocking, heartbreaking, gut-wrenching - but he would not have been suffering.

To make things clear - most people who have glioblastoma surgery walk out of the hospital on their own volition. Most of them continue to function somewhat "normally" until the disease takes over. Chemo and radiation help, but the decline is more gradual. In Rico's case, we walked into the hospital with a relatively healthy human - a bit of a limp, but a spring in his step; mental acuity in check; needed reading glasses but distance vision better than mine; capable of literally anything he set his mind to. Rico walked into that surgery fully expecting to get a little bit better - or at least maintain until the cancer won.

One month later they sent him home in a wheelchair - legally blind, paraplegic, with one working arm and complete loss of his short term memory. They told me they were sorry, and basically instructed me to make him comfortable until he dies. 

He would not have chosen this.  He can't comb his own hair, use a fork without assistance, pull up his own blankets when he's cold. He thought this would help. Did my constant nagging about that hand choose this for him? 

I also feel guilty for sleeping. When he wakes me up at 2:30 am to tell me he loves me, because he can't remember saying it at 8, 10, 11:30, 12, 1 and 1:45, I should feel lucky. I DO feel lucky - damn that's a lot of love. But I also feel tired, and his love, his needs, his worry should trump sleep every time - why do I cry about being loved so much and sleeping so little?

I feel guilty for saying no. Every day all of my kids hear it at least three times - one of them much more often than that. "Can we take a walk? Go to the zoo? Pick up art supplies? Rearrange my room?" No. No. No. No. There is just no time in the day to do anything other than what absolutely must happen. The worst part is that they'll just stop asking. I know - I did. By age 6 I made my own lunch, fixed my own braids, checked my own homework. I had to. I wanted this to be different for our kids. I pray every day that it can be.

I feel guilty for missing my walks with him; guilty for wishing he would make dinner one more time; guilty for not remembering what he gave me for my birthday last year; guilty for wanting him to hop in the car and drive somewhere - anywhere while we fight over which radio station to listen to - and guilty that he always let me win.

I feel guilty about writing this. We have so many good people in our lives, so much love - why does this still feel so impossible? Why am I not tolerating this better? 

We all have therapists. We are all "ok". But therapy doesn't fix broken. Time, love, people - they are the glue that holds broken things together. I hope I am not broken forever.